Now the Internet
Healthcare Coalition (IHC) seeks to develop and promote a code of conduct
through its e-Health
Ethics Initiative. The initiative will address ethical principles relevant
to online, interactive healthcare communications. The IHC is seeking the
consensus of industry, academic, government, patients, and consumer leaders.
The initiative will address quality of content; commercial behavior; privacy,
security and confidentiality; and use of the Internet in the practice of
healthcare. According to its mission statement, the IHC seeks "a self-regulated
Internet in which voluntary guidelines provide effective means for the
legitimate dissemination of accurate healthcare information." Sponsors
of IHC include non-profit philanthropic organizations as well as commercial
entities such as Glaxo Wellcome and drkoop.com. The IHC only accepts donations
on an "unconditional and unrestricted basis."

The IHC held an e-Health Ethics Summit
January 31-February 2. Participants, with consultation from The
Hastings Center, drafted a code to serve as a standard for health-related
Internet services and sites. The code identifies the following basic principles:

Candor and trustworthiness

Quality of content

Informed consent, privacy & confidentiality

Best commercial practices

Best professional practices (for those
who provide health care services online)

The substantive content of the code is
not always intuitive within each of the five categories. For example, "privacy"
is covered in three separate principles. Under the first principle, the
code provides that organizations and individuals providing health information,
products, or services on the Internet have an obligation to disclose the
potential risks of providing personal information on the Internet. Principle
three provides that such organizations and individuals safeguard users’
privacy and obtain users’ informed consent when gathering personal information.
Principle four provides that sites should disclose their privacy policies
and terms of use.

The draft is posted for public comment
through April 14, 2000. Comments will be considered by the e-Health Ethics
Summit Steering Group in preparing a final version of the code together
with background documents. The code is scheduled for release on May 15th.

The American Medical Association (AMA)
has also released guidelines applicable to all AMA web sites. The AMA guidelines
are more extensive and detailed than the IHC draft code. For example, the
AMA guidelines require clear disclosure of site registration requirements,
payment information where charges are made for document delivery, pay per
view, or subscription, etc. The AMA guidelines even address Internet irritations
by providing that sites should not prevent viewers from returning to a
previous site and not redirect viewers to a site the viewer did not intend
to visit. The AMA guidelines were published in the March 22/29, 2000 issue
of JAMA and are available online at http://www.ama-assn.org/about/guidelines.htm.

Both the IHC and AMA efforts are laudable.
The discussion and debate arising from these codes should help define the
privacy and other protections needed by patient-consumers when accessing
health care web sites. It remains to be seen whether "voluntary" and "self-regulating"
codes will offer sufficient protection.